More than a Label

I unsteadily walked up the stairs holding the stick in my left hand. I stopped midway to the top, where I could barely see your dad sitting at his desk typing away at the computer. I peaked at him through the stairwell railings to be sure I could catch a good glimpse. I couldn’t make my way to the top, my legs were too unsteady for the climb.  I stood still, my legs were trembling. I didn’t approach him. I just called to him, arms slouched over the banister, chin pressed up against it, swinging the pregnancy taste back and forth in a sweeping motion, I confessed, “Yep. I’m pregnant. Sooooo, what do we do?” 

And your father said most poignantly, “We have a baby.”

And that, my friends, is the story we will tell one day when Blake William asks us about the day we discovered we were pregnant.

Does this story make us kind of seem like we are complete asshole parents? Ungrateful?

From the sound of our life-changing momentous conversation, it makes it seem as if we were disappointed.

Shocked, yes. Disappointed, no.

We were so surprised because I was told the liklihood of me being able to have kids at all was small. In fact, I was on birth control in order to jump start my ovulation, which was non existent. Or so it was said. We later found out that he was a true miracle baby in terms of me getting pregnant and carrying him.

God is so good!

Despite my reaction, this will always be marked as one of the best days of my life. This, and the day he was born.

It’s amazing the love you have for your child. It’s absolutely indescribable. You pray your whole pregnancy for five fingers and five toes. A happy, healthy baby. A lifetime of dreams that will come true.

Perfection.

I’ve sat down to write this blog post about a dozen times, wondering, where do I start?  I even asked my husband how I’m supposed to begin this one. To be honest, even a part of me has wondered how I can possibly write this post in a way that convinces those who doubt what I’m about to say. Funny, how that’s even something I should be worried about. “Convincing” others. After convincing myself that was a dumb thing to stress about, I then decided to just write it out candidly, as my husband suggested. “Just say it”, he said.

Seems like a good place to start.

Our sweet baby boy has Aspergers.

Doesn’t seem so bad just putting it all out there.

I wrote that sentence in about 4 seconds. But I feel like this diagnosis has been waiting for us, creeping around pointy corners; hiding, appearing, hiding, and reappearing for nearly 4.5 years.

Recently the term “Aspergers” has been folded in to Autism Spectrum Disorders and it now falls under “High Functioning Autism.”

I believe to some of you this diagnosis will serve as no surprise. Since this has all come to light several sweet people have said “Yes. I’ve been wondering.” Or “I’m not surprised.”

Others will think I’m overly crazy and one of those helicopter moms who just tries to label their kid with everything. If you look back at the history of this blog, Blake has had his share of “problems” that we’ve navigated so publicly: GERD, Colic, asthma, stuttering, headbanging, sensory issues…

I don’t blame you for doubting me, or even rolling your eyes. As long as we are being candid here, I used to feel that way about others, that peole were quick to put labels on something that seemed ever-so-slightly out of the ordinary.

It just seems we live in a day and age where everything has a “label” of some sort, and I have always found that a bit frustrating, as a teacher.  Kids are going to be kids, and they all have quirks, and if we go around assigning labels then everyone would have a label of some sort. Right? Right.

While I still believe this to be true (I mean, we’re all OCD, crazy, and abnormal in some sort of way), some kids (even adults) need something more definitive.

I have decided that sometimes labels aren’t a bad thing when we use them properly to provide our kids with the needed help they deserve to make them successful and positive members of society. Though I do believe those labels should never serve as an excuse for anything. I never set out for a label or a diagnosis. I set out on a journey to, initially, find out why my child was banging his head every night and splitting it open! That one “little thing” brought us here. Eventually. Finally.

While Aspergers isn’t its own diagnosis anymore, Blake’s neurologist says she wishes it was, as “autism” can be vastly different from Aspergers, with the major difference being that kids with “autism” or HFA (High Functioning Autism) have some sort of developmental delay in speech or processing. Blake has never had this. All of his issues come from social, sensory, and anxiety problems.
For the sake of medical textbooks (and insurances purposes, as I understand it), Aspergers now is referred to as HFA.
Here is an easy and VERY BASIC graphic that helps explain some of the similarities and differences between autism and Aspergers.

His night time headbanging is known as his ritual, which goes along with what we later discovered to be an OCD diagnosis. (Keep reading). He also goes through bouts of refusing certain colored lids on cups. Lining his cars up. Categorizing things. He wants things a certain way and can have a hard time when they aren’t.

The headbanging also plays into a repetition of motor activities, as well as his desire for “pressure” (weighted blanket), and his desire to be spinning, upside down, and more. We’ve also been told he does it because he doesn’t get enough stimulation during the day, enter our home made obstacle course!

Initially, I was so confused about being told he doesn’t get enough stimulation. His school is so hands on! He plays outside. We limit any screen time, but apparently it’s more than that for him. He needs sensory input. Still learning so much about this!

Socially he can be awkward and immature. Again, something that I thought was completely age appropriate for a 4 year old. Especially a boy! When you first meet him he will sometimes have a baby talk, though he is incredibly verbal and has a high vocabulary. He is shy, but the baby talk is also compensatory for stuttering–which he does when he’s nervous.

He doesn’t prefer to talk about himself, but will talk about subject matters of interest all day long. He doesn’t play with any thing else except vehicles hardly, and those are his main source of interest.

He prefers to play alone and more often gets along better with kids who are older than him or younger than him.

He is easy to anger or easy to cry over small things, but understands himself well enough to handle himself in other situations. There’s a lot of redirecting, and not letting him get away with how he chooses to express himself in our household.

He thrives on structure, routine, and timers.

Some of this stuff, like the fascination with vehicles, is just normal for many 4 year old boys I think, and I mentioned this to the doctors, but they said when you factor in that it is his ONLY interest, along with the list of everything else, then you get into the Aspergers diagnosis.

Kids with HFA or Aspergers are prone to be colicky as a baby and have digestive issues. Not only did B have GERD as a baby but he still struggles with digestive problems, which is why he’s now on a gluten free diet.  HFA kids are also prone to asthma and eczema, of which he has. And recently I’ve found out that it’s common for these kids to have stuttering issues, although, in the autism world it can be referred to as “cluttering” (something I am now working with his Speech Therapist on, to see if we need to alter his course of action.)

He’s always been sensitive to noises, but I never thought much of it. But the older he gets, the more sensitive it seems he becomes.

He doesn’t like things sprung up on him. If I have to go to Publix on the way home from picking him up then he is known to have complete meltdowns over it, because it’s off his schedule. (Mind you, I don’t let him dictate these things, and I still do them anyway, but there has to be a lot of conversation and assuring him it’s okay, and how he should act and handle himself in this situation when it comes to being flexible—yes, these are the conversations I have with him! CONSTANTLY!)

He operates best on a timer, and he has an uncanny knack for timing and knowing the length of time for any given task. He needs to be fully prepared for situations before heading into them, and needs constant reminders about social norms, manners, how to behave in stores, what kind of greeting to give to people when they look at you and speak to you, how to make eye contact, etc.

We enrolled him in jiu-jitsu late last year and he refused to wear the Gi uniform. He had a complete meltdown at practice because he wouldn’t put it on, and as soon as he did it was as if the uniform itself was made of fire. He went BALLISTIC in front of everyone and I ended up having to carry him out of there half naked because he was kicking and screaming over it. If you saw me that day you would’ve thought I had this crazy undisciplined child that I didn’t know how to control. (I know those looks from people because I’m sure I’ve given them to others before, thinking that people need to get a hold of their child and just discipline him for acting in such a way. But until you’re in the situation, you just don’t understand.) So, we were asked not to return to jiu-jitsu until he was more ready.  At this point we didn’t have any sort of diagnosis. I was in the midst of thinking my child was completely broken.  The lovely ladies in my bible study group witnessed me breaking down and crying a few times as I asked them for prayers because I didn’t know what was going on with him. He did get disciplined for acting in this way at jiu-jutsu, because we’ve worked so much with him on VERBALLY communicating. I don’t care what diagnosis you have, there’s a level of behavioral expectation that is acceptable and unacceptable.  This is what we try to teach him through all of this, effective modes of communication rather than acting out.

Michael and I partly blame ourselves for the incident at jiu-jitsu, because we knew our kid well enough to know we needed to prepare him more for wearing that uniform. Just like we had to do for his baseball uniform because in the beginning he refused to wear them because they were pants and they were right around the ankles. With the Gi, we should’ve talked with him. Have him wear it around the house. But, we didn’t.  Parenting fail.

About a month after this happened a friend and I took Blake to ICE at Gaylord Palms. They make you wear one of their heavy coats and he had another meltdown over putting it on. He doesn’t like to wear anything that he’s not already comfortable and used to, so having to put on a foreign jacket, well, he just wasn’t having it. It took ages to coerce him into getting it on. He was crying, screaming, on the floor. I don’t even remember how I finally got him to wear it.  Probably a lot of bribing. No way I was walking out of there. Those were tickets were expensive! Ha.

He gets socially overwhelmed easily. Sometimes at school and church he goes and sits in the corner to decompress.  He does so well at just removing himself when he’s feeling anxious socially. I’m told he just goes and sits by himself for a while until he’s comfortable rejoining the group. I love that he does this and recognizes when he needs a break. (Guess those talks do help!)

When we go to the store, oh the number of times I have told him “remember to look the cashier in the eye and say hello to them if they say hello to you”.  

It can all be super exhausting. Because after saying this to him 10,000 times before entering a store, I’ve always felt like he should just get it by now. And then the other part of me thinks, isn’t this how all 4 year olds act?

It can be exhausting, but I always continue to use all of this as teachable moments to help him be more engaged with others, and more communicative.

I just can’t believe that his headbanging has been ongoing for so long and we never knew it was such a sure sign for anything. It was in front of us the whole time. Doctor after doctor told us that his headbanging was “normal”, but I just knew it wasn’t. I knew there had to be more.

So, how did the diagnosis begin exactly? 

About 6 months ago I set on a road to get his headbanging under control because he splits it open so much at night. I made an appointment with the pediatrician yet again. This time, we saw someone different in our team of doctors. This pediatrician also dimissed my concerns, yet again, (the kid has scars from it!) but she noticed his behavior –he was under the table giggling for no reason and wouldn’t come out from under the table. He screamed at her because this is the ONE doctor in the practice who doesn’t give lollipops and he could NOT understand why, when everyone else did.

(I would like to pause here and say that Michael and I have always prided ourselves on our parenting in terms of sticking to consequenes, setting boundaries, and just generally being strict yet loving parents. When we say something, we mean it, and we follow through with it. Screen time is regulated, and he gets a healthy dose of playing outside almost daily. I say this because it’s easy to judge someone based on their child’s behavior. I’ve been guilty of it. But, even when you do all you can, and you stay consistent, shit still happens!)

Back to the story. Blake was confused that he couldn’t have a lollipop, and kept asking “why” and when she handed him a sticker instead he lost it. We do NOT allow this type of behavior at home, but he just wasn’t letting it go.  It was completely unacceptable and I was doing my best to mitigate this situation in front of the doctor, but these situations with him were becoming a lot for Michael and I. Looking back, I’m grateful how this whole incident played out with the doctor,  because this very incident is what kickstarted everything. I truly believe it was a God thing. She said we needed to see a pediatric counselor and possibly a behavioral therapist for some further testing because, after spending 45 minutes with me talking, she assured me this was not normal. I left feeling thankful for her time and attention, and yet, half panicked/half relieved.

So, we started seeing a pediatric counselor to help him with some of his social and anxiety issues, and just trying to regulate his emotions, as the pediatrician recommended. It was at this time he was diagnosed also with OCD and some social regressions and delays (ie: extreme immaturiy). The counselor, actually, referred us to the neurologist because he wanted us to get the headbanging checked out, after I mentioned he did it in casual conversation. We were only there for anxiety, and I never considered the headbanging could be related to any of this. I’m glad I mentioned it.  Finally, someone who said the headbanging was a big red flag for something! The counselor was the first person to mention possible High Fuctioning Autism to us after taking it all in, listening to us, and spending time with Blake.

I made an appointment with a neurolgoist upon his recommendation. The neurologist did some tests to rule out epileptic seizures during the headbanging episodes, and those tests were normal, thankfully. After the neurologist met  with Blake, she talked things over, she diagnosed him with Sensory Processing Disorder, (noise sensitivities, aversion to certain clothes, textures, and gelled with his OCD tendencies). She said that though he may be sleeping for long hours, his quality of sleep was bad due to the disruption of banging his head. She believed this accounted for a lot of the behaviors we were seeing-because he as exhausted during the day. She immediately noticed his immaturity, anxiety, and social awkwardness. She said he was High Functioning Autism, but more Aspergers. She referred us to an Occupational Therapist, to help with the headbanging, and SPD.

I didn’t realize any other issues until we started OT. We only started attending OT to help with the headbanging, as the neurologist suggested, to try to figure out what to do to stop it. The neurologist mentioned a lot of things to me and the. OT found that his coordination isn’t where it should be. (This is why we love baseball, because it’s so helpful for him and he LOVES it!) His hand muscles are weak-though he can hold a pencil and write well, he presses too hard, often exhausting his hand after only a few letters. His Occupational Therapist mentions this as being an issue with Proprioception, which is how the body responds to movement. He seems to have trouble understanding pressure, and hand-eye coordination.  His core muscles are weak, something that is apparently common in those with HFA. He has trouble with using scissors, and doing any activities that require core muscle strength. (This is why one of the many reasons we have the obstacle course in our home.)The OT has helped us tremendously control the headbanging with weighted blankets and in-home obstacle courses! She also discovered some other issues, that are very common in kids with Aspbergers. His OT is also kind enough to work on some social issues while we complete the process of official diagnosis “on paper.”

Our next step is to see the Pediatric Behavioral Therapist (I believe?) for OFFICIAL evaluation. There’s no denying at this point. I’ve had to explain to people at church so they can kind of understand him-why he goes off on his own, why he doesn’t like the loud and fun games they play sometimes. I’ve also had to explain to his teachers, because there have been some issues going on at school-not behavioraly-but regulating his emotions, and helping them to understand why he wants to be alone at times, and a few other issues

I feel like a confused mom sometimes, slowly trying to navigate the waters on days when the boat is rocking in a hail storm. Other days the sun is shining and it’s all smooth sailing. This can describe parenting on any given day, though, with any child!

In short, we are still figuring all of this out.

It’s really okay, though, and I’m incredibly relieved to know, to be honest, that we now know what we are working with here.  I feel like I can relax and just ride the wave, even on days when there are rough waters and he doesn’t handle a situation well. I feel like I’m better mentally equipped to just….well, get it.

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Like when the hand dryer in the bathroom is too loud at Target.

When the car radio is too loud.

When I suddenly have to make an impromptu trip to the store after work to pick up dinner.

When I’m going “the wrong way” ( a different route) on the way to school.

When Chick Fil A is out of choclate milk (Really?!?).

When he freaks out because there’s toothpaste on the corner of his mouth.

When he gets his face wet in the bathtub.

When he’s walking around outside and he gets sand in his shoes.

When he gets frustrated with “Alexa” because he’s trying to tell her to play his favorite song (“Sugar” by Maroon 5) and he’s stuttering because he knows that he has to talk quickly in order for her to respond, but he runs out of time with her and he gets frustrated.

When the scissors are “confusing” for him.

When he gives up on something because he tells us he isn’t good enough (Yes, this already had started happening!) 😦

When he won’t touch anything green to eat.

 

There’s just some comfort in knowing it’s a “thing”.  I can handle a “thing” when I know what it is. I can handle the “label”. I couldn’t handle, very well, the looming unknown, wondering what the hell was going on with my kid. I feel so much more at ease with it all.

Consistency is key and Michael and I have always stood by that when it comes to our parenting style.

At the end of the day, not much changes in our eyes.  He has more appointments throughout the week, and do we things a little differently around here (raise your hand if you have an obstacle course in your living room?)-haha! It doesn’t change much about how we do things, except it helps me to understand the “whys” of it all. We still hold him accountable for his actions. No diagnosis will change that.  We are taking the route of normalcy, continuuing on with what we do, but at least now we have a clearer picture and dont’ feel like we are losing our minds as much because it all makes sense. He just needs a little something extra. 😉

He’s incredibly kind hearted, and you’d probably never know any of this if you’ve only met him a time or two. He may come across as a silly, crazy and weird 4 year old.

We explain things to him more in depth, and just work with him more on communicating his feelings, navigating sensory issues and continuuing on with OT appointments and speech therapy. We do not let his OCD control things, but instead, work through it. None of this defines him.

He has five fingers. Five toes. He’s happy and healthy.  He WILL have a lifetime of dreams that will come true. And I truly believe that’s because God has put people in place in our lives that have helped us to intervene early. I feel he’s getting all the help he possibly can.

This is who Blake is.

His Aspbergers makes him perfect.